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Thursday, November 10, 2011

NHBPM Day 10 ~ Small-scalers and the future of blog

The future of online activism. Our favorite social media sites are constantly undergoing renovations to become quicker to navigate, easier to interact with, all encompassing, mobile, and everywhere. Imagine the same thing about your community – how will they evolve, improve, and grow?

What do we gain the most from social media? Community.

What do we need the most from social media? Community.

In what way are we already doing it right? Community.

When boreal toadlets mass together they can raise the water temperature by multiple degrees compared to the water around them

Disease specific communities

Each disease has its own set of primary current needs. As a community each disease group has a unique set of overiding goals and as patients they have a unique set of symptoms and daily challenges. This leads to duplication in topics when we all start blogging within our specific disease and amongst the broader health community.

In the larger health community there are certainly similarities that let us support each other across conditions. But there are subtleties here and there, in addition to the more obvious enormous differences that mean that each new blogger (thousands and thousands) can fill an exact niche that is useful.

Some bloggers have skill sets allowing them to simultaneously work toward community needs, individual patient needs, and our need to see who these authors really are and what they are really dealing with. Some of us take smaller bites or excel at a more specific piece of what our community needs.

If you are writing about yourself between crashes, feeling like your story is too tangled and too specific to guide anyone else...it may be for some readers. But you also may be the first person or the only person whose story resonates with a desperate patient scouring the internet for exaclty what you have to offer.

Multiple recent tweeted quotes from @lobsterquotes hit this idea on the head:

No snowflake ever falls in the wrong place~Zen saying

Arrange whatever pieces come your way~Virginia Woolf

Just because something doesn't do what you planned it to do doesn't mean it's useless-Thomas A. Edison

You may think your actions are meaningless and that they won't help, but that is no excuse, you must still act~ Gandhi

Community needs ~ its in the wind

As a community of health bloggers, we are already keeping up with and adapting to the social media tools as fast as they keep coming. It's an overwhelming task, but we're already proving ourselves up to it. We'll keep up with whatever it brings in the future.

As the author of "Tales of Rachel" posted this morning, logos and trademarks won't make the future of blogging. These are temporary things that eventually lose their meanings. I agree. Each new movement eventually does, too, but they each help us gain quite a bit of momentum during their time.

Momentum forms the vehicle by which these thousands of small contributions, paired with those multi-talented, multi-scale contributors I mentioned earlier, will continue to motivate the medical community and the funding of research that leads to better basic information about the disease, better tools for defining/diagnosing/curing the disease, better acceptance of the disease, or better protections for people with the disease. These are the ways in which I see the small-scalers contributing to the larger-scale needs of a disease-specific health community even more moving into the future. There will otherwise be no motivation for these answers to be sought for a multitude of otherwise unprofitable diseases.

Small scale patient bloggers

The small-scalers are the future of applied patient advocacy....they are the answer to "what now" when the broader needs are met (or strides are being made) for a given disease.

Chronic fatigue is a perfect example. The progress made in the past decade toward acknowledgement and acceptance of this disease is remarkable. We are still lacking a lot of answers, but we've also gained a lot of answers we didn't have ten years ago---answers of the type that gain validity and access to care for patients.

With as far as we've come, why is it still so hard to this "stick" in the real world? With so many answers available, how are so many doctors and employers and agencies still able to ignore what's been documented and proven?

That's the part that's up to us (the 'applied' part). When you know that you are not alone, you know that you are representing a group of patients when you decide whether or not an injustice is worth fighting. You realize that its easier to take a partial victory when you can get it, but if you let the prinicple go, you are leaving a bigger fight for the next patient or employee or friend who is faced with that stigma. And you strengthen it by letting it go.

When the world starts gradually convincing you after recovery to look back and see it their way....that you got better because you realized they were right and you just needed to get out of bed and be positive and fix your broken attitude....in order to have a more digestible and appetizing story to tell, you will say no. You will remember your community and remind the world that your recovery does not negate the illness or the injustices you faced while you were sick. You will remind the healthy that it could happen to them and they will listen.

This is how stigmas die. This how health blogging will grow stronger and continue to tangibly change the future of healt care and patients rights.

Repetition is everything, with the strength of the message compounded exponentially with each voice.

Arrange whatever pieces come your way~Virginia Woolf

This post was interupted by a trip to urgent care to get my daughter's shoulder x-rayed. She seperated a joint in gymn class (I like her gym teacher but backward running towards other kids running backwards is not my favorite activity for my tiny daughter to participate in), but as far as they can tell nothing is broken.

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About this blog

I started following sea turtles early on in my illness. In their presence I never feel like a sick person. I use the blog to share and keep track of useful articles and links and capture snapshots of my life through illness, diagnosis, and recovery. I've come a long way so far, and even my ability to write coherently has obviously improved throughout the life of this blog.